What does making TB a notifiable disease mean to us?

[हिंदी] On one hand the Indian Revised National TB Control Programme (RNTCP) needs to be complimented for making tuberculosis (TB) a notifiable disease (read the government order issued on 7th May 2012 here), but on the other hand there are words of caution and oft-repeated list of actions RNTCP should consider to reach the unreached populations who need TB services. Probably in response to the alarm bells that went ringing when Mumbai reported ‘total drug-resistant TB cases’ the government has taken the step to make TB a notifiable disease.

Making TB a notifiable disease, will, perhaps, yield some positive outcomes – for instance, all private doctors or healthcare providers, laboratories and other caregivers will have to report every single case of TB to the government which will surely give a more real situation analysis of the burden of TB, where TB patients are getting treated and who is treating them (public or private healthcare centres), and other data that might have a positive outcome on public health.

Dr Ashok Kumar, Director General, TB Division, Ministry of Health, Government of India, said in an IBN Live TV news: "It is essential to have compete information of all TB cases. Therefore, the healthcare providers shall notify every TB case to local authorities, that is, district health officers or Chief Medical Officers (CMOs) of the district and Municipal health officers of a municipal corporation, every month in a given format."

However this may also boomerang – especially for those populations who are currently unreached and might be forced to go underground for a range of reasons and refrain from accessing public or private healthcare system. This will clearly have a very profound negative impact on TB control and health system in general. According to the RNTCP, it had achieved a ‘new sputum positive TB case detection rate’ of more than 73% in 2010. This also implies that the RNTCP is not reaching to, at least, 27% of estimated number of people who need TB care services. Will making TB a notifiable disease really help us reach these unreached populations – is a big question to which we see no clear answer.

We also apprehend confidentiality related issues, and forcibly treating patients that are defaulting in confinement or isolation wards, among other concerns.

There is another brewing human rights question. With close to 100,000 people estimated to contract multidrug-resistant TB (MDR-TB) in India annually, the RNTCP has provided standard treatment to only 3610 patients since the inception of DOTS-Plus programme (source: RNTCP Report, December 2011). By its own admission, the RNTCP aims to deliver MDR-TB treatment to only about 30,000 patients by 2013 thus leaving out 70,000 who will still be in dire need of MDR-TB treatment, care and support services every year. Turning down, or not reaching out, or not being able to reach out, to the remaining 70,000 cases (as per current estimates) is, honestly, unacceptable in terms of public health as well as social justice – and – a looming human rights emergency.

When there will be no treatment provided by the RNTCP for every person who needs MDR-TB treatment, care and support, making every TB case notifiable, might have very far-reaching serious consequences for the patient, her family and TB control in general. Has the government considered the impact of a positive diagnosis of drug-resistant TB on the patient, her family and community, when the treatment may not be available for her? Presently MDR-TB treatment is available to less than 3% and 97% of those-in-need are denied treatment, care and support for MDR-TB. In communities that are identified to be at higher risk of TB such as injecting drug users, illegal migrants, people living with HIV (PLHIV), among others, making TB a notifiable disease might not bear positive public health results.

According to an expert “Civil society should call for an open discussion and debate with RNTCP on the benefits of the policy of compulsory notification of TB cases to the TB authorities. What happens if patients face stigma and discrimination if the policy is implemented wrongly? Will this not drive patients to seek care much later or even disappear? At a minimum the government should have had a dialogue on how to ensure that the policy will be implemented with a guarantee of medical confidentiality, psychosocial support and access to the most appropriate treatment as per WHO guidelines.”

Making TB a notifiable disease alone will not help unless accompanied by a very sensitive approach that ensures that no negative public health or social justice outcome is allowed to negate the gains made by TB control in the past years.

Genuinely engaging affected communities in TB programmes as equal partners with dignity, ensuring quality counseling in TB programmes, improving treatment and health literacy, addressing TB related stigma and discrimination that still is rampant in our society, thinking beyond DOTS when it comes to treatment provision, integrating TB programmes with other development programmes such as those on nutrition, sanitation, harm reduction, HIV, diabetes, among others, monitoring irrational use of drugs, strengthening health systems, and many such measures will yield more sustainable and positive public health and social justice outcomes.

7 comments:

A study published just before Christmas in the Clinical Infectious Diseases Journal on " totally-drug-resistant-tuberculosis" in India led to several news reports on multidrug-resistant TB (MDR-TB) but also extensively drug-resistant tuberculosis (XDR-TB) in different states. The government in response has decided to enforce an old public health law under which TB is a notifiable disease.

According to the news reports - with immediate effect - all private doctors, caregivers and clinics treating a patient with TB will have to report every single case to the government. See "Finally, tuberculosis declared a notifiable disease", Times of India, 9 May 2012 which is available at http://timesofindia.indiatimes.com/india/Finally-TB-declared-a-notifiable-disease/articleshow/13060051.cms

According to the Times of India the notification was sent to all states on May 7. The Times of India news report also quoted from the notification - "In order to ensure proper TB diagnosis and case management, reduce TB transmission and fight emergence of drug resistant TB, it is essential to have complete information of all TB cases. Therefore the healthcare providers shall notify every TB case to local authorities - district health officer/chief medical officer of a district and municipal health officer ofa municipal corporation, every month. Those who come under the ambit of healthcare providers include "clinical establishments run or managed by the government, private or NGO sectors, and individual practitioners".

Dr. Ashok Kumar, DG, TB Division, Ministry of Health in IBN Live: "It is essential to have compete information of all TB cases. Therefore, the healthcare providers shall notify every TB case to local authorities, that is, district health officers or CMOs of the district and Municipal health officers of a municipal corporation, every month in a given format."

According to an earlier note of the TB control division, "With improved notification, RNTCP could improve case management and reduce TB transmission and the spread of drug-resistant TB."

Dr Nata Menabde (WHO Representative to India) in an email to WHO HQ and Stop TB on May 8 claimed that WHO India should be credited for the development - Quoting from the email - "This is to share with you an important achievement we have accomplished yesterday for TB. As you know TB is not yet a notifiable disease. Through a series of advocacy efforts backed up by gathering of evidence in support for notification, WHO-India was able to take up this matter with GOI successfully and an executive order has been released by GOI yesterday making TB a notifiable disease in the country. We have helped the programme to develop necessary formats for notification and are now developing plans for the implementation, which include use of ICT including mobile technology. This along with the introduction of case based web based notification system; the first phase is expected to start next week and is expected to bring a necessary boost for the country's TB burden estimation and PPM initiatives."

So far so good BUT there are some very important questions.

WHAT does notification of TB diagnosis to TB authorities mean for patients and their families?

HAS the community which is most vulnerable (e.g. HIV+), health groups in India been consulted on what this means for patient confidentiality?

HAS this notification been coupled with the guarantee of treatment?

CIVIL SOCIETY SHOULD CALL FOR an open discussion and debate on the benefits of the policy of compulsory notification of TB cases to the TB authorities.

At a minimum the government must ensure that the policy will be implemented with a guarantee of medical confidentiality, psychosocial support and access to the most appropriate treatment as per WHO guidelines.

1. It [making TB a notifiable disease] is a step taken in right direction by the Ministry of Health and Family Welfare (MoHFW) and the programme (Revised National TB Control Programme - RNTCP) and let us congratulate them for this significant achievement. The notification is an indicator of political commitment, as we know the step is not an easy one.

2. We now have an additional tool to monitor what goes on with treatment of TB among practitioners not yet 'involved' with the programme. In a way this will compulsorily involve them and ensure right treatment for TB. Whatever may have been the trigger point, this was a long felt need and specifically for a vast country like India where significant proportion of TB cases get treated in unknown conditions

3. Certainly notification does not imply universal access to all patients but it certainly intends to achieve universal availability of standard/ quality treatment to all patients who are put on treatment. As we all know putting a TB patient on wrong/ sub-standard treatment is worse than not putting the patient on treatment at all.

Having said that I also agree with some of the concerns raised by members in this forum about its implications for the patients and communities specifically whether it would promote any form of stigma or discrimination. However TB is not the only notifiable disease though it may be unique among the notifiable diseases. I feel that civil society should deliberate and come up with their recommendations for the programme (RNTCP) to effectively implement this tool and prevent misuse. Needless to say that civil society by itself can play the watchdog role to check the ground realities and generate information that feeds into policy. The bottom-line is let us move forward with another weapon in our armoury to eliminate TB.

NOTE: The views and ideas expressed are personal and not intended to represent those of my organisation. The organisation may or may not subscribe to any of these

Notification of TB is very appropriate step and is going to have huge impact on the managing of TB burden in the country due to so far almost insignificant reporting from private sector and not following the standard treatment guidelines leading to multidrug-resistant TB (MDR-TB).

Notification of TB cases is a remarkable decision of Government of India and how the Revised National TB Control Programme (RNTCP) develops the TB case notification system from different sectors in the coming years is something very interesting to observe.

Presently TB cases outside RNTCP are being reported mainly from the following two sources:

1) Non-RNTCP government/ public sectors (Public-Public Partnership initiative): Those sectors have their own health services like Defense, Railways, Para-Military, Mines, Education etc. Some of these sectors are already reporting TB cases detected by them to RNTCP wherever linkages between these sectors and RNTCP have been developed. The current policy decision of TB case notification is expected to scale up and strengthen those public-public partnership linkages as TB case notification from non-RNTCP public sector should be comparatively an easier job than the same from non-government private sector.

Besides, there are NGO/Private Practitioners' Schemes of RNTCP that have been engaging Private Doctors and NGOs with RNTCP on individual basis. But these linkages are not enough as the non-government and private sectors providing health services to the people of the country including TB management and care are so vast. It is estimated that about 45% of the TB cases are being treated in the private sector. There is an urgent need to expand the PPM (Public-Private Mix) initiative of RNTCP much beyond the above-mentioned projects and on-going NGO/PP schemes to achieve the two main objectives:

1) To standardize the TB treatment across the country2) To enhance TB case reporting from all healthcare providers

The policy decision of making TB a notifiable disease should help in achieving the two objectives, provided the policy will be rolled out with proper strategy and approach with clear and simple operational protocol in place that will be accepted by all stakeholders and implementable. The role of Civil Society will be immense to help RNTCP to achieve its notification objectives. Other than advocacy, Civil Societies can function as an effective interphase between the National Program and private sector to enable and roll out the notification process. Currently, the National Program is still finding ways to sustain the communication with private sectors as mere one/two time sensitization of the private providers has been found to be grossly insufficient to engage them with RNTCP. The private practitioners should be kept under constant communication and followed up, where the Civil Societies can play a meaningful role, definitely with some kind of external funding assistance or incentives. Prioritization of the private practitioners according to the volume of TB cases been provided services by them should be an important strategy that RNTCP may consider in coming future to initiate the process of notification. At the same time the national program should take proper attention and care of sensitive issues like maintaining confidentiality of the TB patients including their HIV status during the notification process.

I fully agree and endorse the points of Blessi in this regard. Let me wholeheartedly congratulate Central TB Division and Government of India for taking such strategic and timely decision, especially at a time when the national program has taken the decision to achieve the targets of Universal Access of TB care in the country.

We are sharing with you the email received by us from the Stop TB Partnership, sent by Dr Ashok Kumar, who heads the India's NTP.ThanksJitendra DwivediAbhinav Bharat Foundation---------------

IMPORTANT: THE GOVERNMENT ORDER making TB a notifiable disease in India is available online at: http://www.scribd.com/doc/93582771/TB-Notification-Government-Order-dated-7th-May-2012

Dear Sir / Madam,

As you are aware that Tuberculosis is a major public health problem with substantial morbidity and mortality. The delayed / inappropriate diagnosis and irregular & incomplete treatment of TB may contribute to complications, disease spread and emergence of Drug Resistant TB. Therefore for an effective TB control, to reduce TB transmission and to address the problems of emergence of Drug Resistant TB, it is essential to have complete information on all TB cases. Keeping this crucial national & public interest in view, the Government of India has issued the above mentioned order for TB notification (copy attached), with due approval of Hon’ble Union Minister of Health & Family Welfare.

You are requested to kindly immediately bring this order to the notice of all concerned for compliance. In this context, may kindly ensure the following :-

- All health care providers (clinical establishments run or managed by Government including local authorities, private or NGO sectors and/or individual practitioners) in all the districts and towns in your concerned State/UT be immediately kept informed (through appropriate mechanisms) on the contents of the above-mentioned Government Order on TB notification in India for their compliance with immediate effect. The format for monthly report on TB notification please be shared with them.

- The list of the local health authorities (as per the above said order) and their updated contact details (phone numbers, addresses and email IDs) be published in local media as well as the concerned websites and may also be communicated to the clinical establishments.

- The TB notification as will be submitted by the clinical establishments to the local health authority need to be kept confidential.

- The mechanism for providing Treatment adherence support to all TB patients diagnosed and /or treated outside the Revised National TB Control Programme be also appropriately be designed and implemented by all concerned health authorities and staff.

The prompt actions taken on above requested subject matter may kindly be communicated to this Central TB Division / Dte.GHS / MOHFW, GOI.